Toronto is a great place to raise a child with Down syndrome
An unexpected diagnosis meant our second child needed extra support. Here’s how the GTA delivered
BY NAO PINARD
After our second daughter Emalee was born, the doctor surprised us with a diagnosis of Down syndrome. All my plans for our family came to a screeching halt. Would we be able to raise this little girl in a bilingual household, as I had intended? Would she have friends? How would this affect her relationship with her older sister, Maya? How would getting all the extra medical, therapeutic and educational support she needed affect us as a family?
Spoiler alert: everything turned out fine. Better than fine, in fact. My girls are in junior kindergarten and second grade now, and we have the active life of any young family. Yes, the first year of our Down syndrome journey felt like complete chaos, as we figured out what we were doing and what support was out there. But now, four years in, we realize how fortunate we are to be raising our family in a place where the resources, services and community-mindedness are exceptional.
Right after I became the mother of a child with special needs, I was terrified of experiencing isolation. I had experienced postpartum depression after my eldest daughter was born, and I didn’t take good care of myself when she was little. This time, as I felt the symptoms starting up again, I was proactive in seeking help and a support network. I knew I’d have to take care of my own mental health, so I could be fully present for both my children.
Surrey Place, a United Way-funded agency, became an integral part of our lives. They connected us with other families that had children with Down syndrome, so we wouldn’t feel alone on our journey, while helping Emalee with her development. I started bringing my youngest daughter to their music therapy group when she was just three months old, and although she aged out of that program at age two, she made friendships that I hope will last a lifetime, with children whose mothers I consider to be my sisters now.
I also connected with a psychologist at Surrey Place whose support was critical in helping me manage my postpartum depression and anxiety. She not only guided me through my anxieties about becoming the mother of two children, but also provided me with strategies for navigating the unfamiliar territory of my baby’s special needs. She encouraged me to take time for self-care and to reach out for support from family and friends when I was feeling sad or alone. And she validated my worries about receiving an unexpected DS diagnosis.
Emalee also received services at Surrey Place from talented early-intervention and speech and language specialists, who used a play-based approach to help develop her speech and motor skills. I believe that was integral in her becoming the effective communicator (and joker) she is today, thriving in a home where we use English and Japanese (my native language) equally. She also learned many useful American Sign Language signs, which helped her communicate as a toddler when it was harder for her to form words orally. Although children with Down Syndrome can have significant global and intellectual delays, today, as a four year old, Emalee can join in schoolyard games with peers and chatter about her day, once she gets home.
Some of my initial worries after Emalee got her diagnosis were not about our new baby, but about her big sister, Maya. I wondered how much the time we spent taking care of Emalee’s needs would mean less time for Maya. I also worried about whether they would be close, as sisters. Fortunately, another of our favourite spots in Toronto, our community and recreational centre Variety Village (also a United Way-funded agency), has offered some great opportunities for both our girls to do lots of activities together and forge a strong bond.
For the past three summers, Maya has attended summer camps there, where she gets to play and learn among children with a range of intellectual and physical abilities. Not only does Maya have fun doing things like swimming, dancing and art, she also gets to meet other siblings of children with special needs—with whom she has an instant affinity. Together, all the children at camp nurture personal qualities of compassion, patience, kindness and inclusion.
I had such a proud-mom moment last year when I heard Maya having a conversation about the camp with a family friend. When asked, “Do you have special kids in your camp?” she responded: “What special kids?” I’m so glad that we’re able to raise our children surrounded by people of diverse abilities and to teach them to see beyond differences.
Year-round, since before her first birthday, Emalee has been swimming in the pool; walking—and later, running—on the field-house tracks; and doing physiotherapy at Variety Village. Both my kids have reached major milestones—and made great memories—within their walls. And I love going there not just for the activities, but because of the way my youngest daughter greets and is greeted by everyone we pass in those halls. You feel community and positivity from the moment you walk through the doors. It’s like our second home.
It is never lost on me just how fortunate we are to be raising our family in the GTA. Beyond specialized facilities like Surrey Place and Variety Village, we’ve found many mainstream activities, where Emalee is welcome, in our home city of Scarborough. That includes community classes and clubs for activities such as soccer, baseball, dance and gymnastics that any child her age would love. It brings me so much joy having inclusive programs close to home that both girls can attend—not to mention, it’s a real time and sanity saver for me that I don’t have to drive them to separate activities all over town.
Although most of our daily interactions with people in our community are positive, we’re no strangers to silent stares or I’m-so-sorry comments, when they first encounter Emalee. I believe it’s critical to normalize differences among people in our communities, whether physical, developmental or intellectual. There would be even fewer awkward interactions if we taught our kids from an early age to be inclusive. Having facilities and organizations that bring people of all abilities together benefits everyone in the community.
That said, sometimes it’s really great to get together with families a lot like ours and celebrate all that we have in common. The Down Syndrome Association of Toronto creates opportunities for families—or just parents and caregivers—to meet up and have fun together. Despite my introvert tendencies, I’ve always found it easy to socialize and connect with people at these events. Our local Down syndrome community is extremely welcoming: We have each other’s backs. Even with the array of services available in the city, there is a unique support that can only be provided by another parent living the same things as you.
Down syndrome has not prevented us from living a rich life. And the GTA has been the perfect home for our multicultural, multilingual, multi-ability family. It has allowed both my daughters to live full lives, given us a true sense of belonging, and brought some of the best people we know into our world. We’re not in survival mode, the way we were when we first got Emalee’s diagnosis—we are thriving, as a family, in a place we’re lucky to call home.
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